My Great Breast Cancer Adventure

Don’t call me a survivor - Salon.com

I particularly liked reading this article after all of October's pink shit hoopla, which I have never cared for because, well, I've already written about that in earlier posts.

I like it because it's so open and honest. Cancer is rarely "cured." I mean, maybe you can have a cancerous mole cut off and get cured. But in general, when you talk about cancer, "cured" is a misleading word. You go into remission if you are lucky. And you pray every day for the rest of your life that you will stay in remission. But that is not the same as being "cured."

If all goes well, later this week, after two years of treatment for Stage 4 cancer and over three years since my initial diagnosis, I will have the final treatment of my clinical trial. If all goes well, my scans will say that I’m still cancer free, that my drug regimen has worked beyond all expectations. For all this, I’m exceedingly grateful. I’m proud. But don’t tell me how to be happy about it.

Of course I’m humbled and awed and frequently joyful for the gift of not being dead, especially since not so long ago the odds were so much against me. I’ve been part of a groundbreaking medical miracle.  I have learned so much in the past few years – deepened important relationships and made extraordinary new ones. I believe it’s made me a more loving, devoted, present person. And I’m also thoroughly traumatized by the whole experience. That’s part of it too – a big part, in fact.

CONTINUE READING THIS PIECE via www.salon.com

STOP Texting While Driving (or any other time when you should be looking where you're going)

Her Trees

 

A stranger, Francois,
had written
to say
how he felt
about her photos
of trees

Holy sentries
posed against
urban fences,
walls.

She held his letter
in her hand
while Nurse Joon
scurried
to her reclining chair,
checked the
IV flow.

Today she didn't
care
about needles
that scarred
her veins.

Francois
loved her trees
and had written
to tell her so.

***

Tree Portraits on Flickr

How to Get Rich Quick!

Ah, my songwriting and photography skills are still paying off big-time! The day before yesterday I got a letter in the mail telling me that they have added another $1.45 royalty credit toward the $50.00 I must earn before I can actually get paid for the song lyrics I wrote with my friend Doug, oh so many years ago, for the song "One More Truck Stop Christmas" which can be found on the world-renowned "specialty" CD titled "The Trucker's Christmas Album."

And yesterday I got an email from the Red Bubble photography website telling me that I had made a sale! Yes, I sold one greeting card made from my photo of the "bakery couple"  (taken many years ago when I was just beginning to play around with photography and experimenting with Photoshop post-processing) who were at work inside their Mexican bakery on 24th Street in the Mission District. The card sold for $3.45 and I have made sixty cents, also not to be sent to me until my sales reach some minimum amount, probably also $50.00.

I will have to make sure that I arrange for these profits to go to my son Will after I am gone, just in case they ever do get up to $50.00. He'll most likely be retirement age by then, and can use it to help pay for healthcare. Maybe he will brag to his grandchildren about how his mother used to be a popular photographer and songwriter, particularly in truck driver circles . . . back in her day.

 

What's Not to Love?

 

The quality of many of these photos, which I took back when I first got my camera in 2007 and went amateur photography-crazy, is not great (sucks). But a few aren't bad.

What saves them, and what even elevates some to the realm of wonderful (in my humble and smitten opinion) is the subject himself.

When I looked again at Jack in these photos, especially the ones that show his face up close, all I could think was: So easy to love. So many things to love about this man. 

What a beautiful face he has. I try to capture his expressions when he is working, because he is so absorbed in his work he doesn't even know I am there. He is oblivious. Lost (in the best way). Focused, meticulous, dedicated. Quietly masterful. 

I look at that face and feel, yes: the whole shebang.

The Trauma of Being Alive

Here's the LINK to this article that was in the NY Times on Aug. 3rd.

Good article. 

Eight Years Ago

 

Eight years ago I was diagnosed with breast cancer. My reaction: terror. 

For a very long time -- I can no longer remember how long, exactly, but at least a couple of years -- the terror was keen and unrelenting. World turned upside down and inside out.

It felt like I would never be free from that pull of . . . the undertow. Every day, no exceptions, I thought about the cancer, I thought about death and feared it.  I feared whatever terrible things might come next. I feared pain. I feared so much. I was consumed by fear and dread.

Women who were farther down the breast cancer road said it would get better, slowly but surely. That I would get better at coping, at being braver despite my fears.

Miracle of miracles, I did. Slowly but surely. 

Am I no longer fearful? Ha ha, of course not! I am still a big fat fraidy cat. Also a whiner.

BUT.  I am much less fearful. I live with cancer now, much as I live with any and every other pro or con in my life. It's just one part of the whole big list of "parts of my life." It used to be this huge, glowering monster that stood out above everything else. Its shadow cast a darkness that swallowed up all the other, smaller parts (seemingly smaller at the time, that is) of my life.

Now? Now it's just one more thing that regularly gets put on one of my many, everchanging "to-do" lists.

Buy more dog food: CHECK.
Send new batch of poems to Julie: CHECK.
Start working on Fall Session class schedule: CHECK.
Change date of next chemo appointment, and don't forget to ask about MRI results: Check. 
Hair appt: CHECK
Skype Will: CHECK
Clean up bedroom!: CHECK

 

Dog in Bed
by Joyce Sidman

Nose tucked under tail,
you are a warm, furred planet
centered in my bed.
All night I orbit, tangle-limbed,
in the slim space
allotted to me.

If I accidentally
bump you from sleep,
you shift, groan,
drape your chin on my hip.

O, that languid, movie-star drape!
I can never resist it.
Digging my fingers into your fur,
kneading,
      I wonder:
How do you dream?
What do you adore?
Why should your black silk ears
feel like happiness?

This is how it is with love.
Once invited,
it steps in gently,
circles twice,
and takes up as much space
as you will give it.

I love/adore this simple poem, which (if you want to relate it to the Breast Cancer theme of this blog) is not only about love, it's about how to alleviate stress. And whenever or however you can do that, you are moving much, much closer to healing. NO DOUBT ABOUT IT.

 

 

Sunday Morning

Gray as can be. The sky, I mean. Coffee'd up but still asleep. Uh oh. What now?

Back to bed? Already?

Or rally?

Try to be like Seth Godin? Mimic some post of his? Oh god. His name has god in it.

I wonder how old our old Seth is. I should look him up on Wikipedia, right? I've got nothing better to do, right?

Sunday morning. Day of rest. Uh huh.

Advice to self: Focus harder, harder, harder!

Take your shot of Inner Garden probiotic. Eat your rice-a-cheesy.

Take a shower.

Ask Jack to scratch your back.

Scoop everything up into one great big humongous pile.

Put "nap" on your to-do list.

Go talk to Olivia. Stroke her silky ear.

Rice-a-cheesy NOW!

 

My New ('ish) Smart Car (2008, newest car I've ever had!)

Forgot to tell my sister Jill that I got this car a month or so ago. Here it is, Jill! Parked next to one of the two new Japanese maple trees that we planted along the side of the house, along with one gingko. I was ecstatic about all four purchases. The maple leaves will turn different colors ranging from green to yellow to orange to red. The gingko will alternate between green and a glorious shade of yellow. Of course, it will take a gazillion years for them to get big, but that's okay. I'm still as thrilled as can be. 

Parking my LouLou Pie is a dream. Driving her is like playing with my favorite toy. 

Olivia Bouchet, Dog of Many Faces

Once

 

 

Once, I was a salmon. I swam upriver to

mate against all odds. That

was what I did.

 

Once, I was a hummingbird in

search of nectar, committed to

the hunt for more. Every day, I

sought the pleasure of

a thousand flowers.

Every day, my wings became a blur of

iridescent splendor. Surviving was

my anguish and my treasure.

 

Once, I was a curtain. Some days the

sun streamed through me, my cotton ablaze in

creamy white against the

window. Shadows came alive inside

my weave.

 

And once, I was a shadow, born of light.

I resembled a ribbon—rippling,

unfurling—that could never

be cut. I got to feel the soul of

something I was not.

 

Afternoon Curtain

Yesterday's Class

How did it go? you ask. And did the universe come to my rescue? 

Well, my performance wasn't a  9 or 10 on the scale of 1 to 10. Nor was it a 1 or 2. That's about as specific as I can get. You'd have to ask the students who took the class. Or I guess I should ask them. Should send out one of my "Course Evaluation" feedback request forms. But I don't want to. I have enough to do without adding that onto my to-do list. Like writing this blog post, right?

The universe helped to keep me from falling flat on my face, or from crashing my darling Smart Car on the way over there, or from falling asleep sitting up in my orange swivel chair in the middle of trying to get out some garbled sentence. But I can't say that it wiped the gray clouds and fog out of my head and replaced them with clear blue sky and brilliant sun. There were several moments when I became a moron.

I really was extremely tired and muddled. I'm sure it showed. I'd made, for example, a big stack of fifteen 3-page handouts. At the end of class, I bid everyone goodbye, and fifteen minutes later noticed that stack of handouts sitting there on the table next to my chair. Just one example. So yeah, I emailed it to everyone. Not the end of the world, but still...

Mostly it was about being unable to improvise, to say or do smart stuff off the cuff, which is by far the best way to lead a class. You refer to your notes and lesson plan, sure. But you are able to change it up as you go along, as needed. You can riff. You can play off of what your students are asking and saying. You don't have to constantly be looking down at the lesson plan every five minutes, following it as if you were a robot. 

Anyway. Such is life. Some days you are more awake than other days.

You move on.

 

Today's First Question

What does one write on one's blog at 5:42 a.m. on a Sunday morning? More importantly, why would one want or need to write a blog post at such a time?

Good question.

Well, when one sets one's alarm for 7 a.m., hoping to get a good night's sleep the night prior to teaching a morning class that starts at 10:30 a.m. (which means leaving the house by 9 a.m. but preferably 8:45 a.m. for reasons one doesn't want to bother listing at this moment) but wakes up at 4:30 a.m. with "gastrointestinal issues" (and let's just leave it at that, allowing readers to use their imaginations), one finds oneself UP, bed made, coffee in hand, dishwasher now already loaded with dirty dishes that were in the sink when she woke up, staring zombie-eyed at the laptop screen.

By now (my how time flies when you are having fun in the cold bathroom) it is 5:42 a.m., and one knows that by exactly 10:30 a.m., six hours after waking at 4:30 a.m. and precisely at the moment when the class will come to an official "Okay! Let's get started!" one will be unable to muster a single cogent thought except for: "I need a nap. Oh god. I can't keep my eyes open a second longer. Fuck. Fuck fuck fuck."

That is what one will be thinking while facing a room filled with 15 students all awaiting words of instruction and wisdom.

One will wish she were not thinking this thought, as she surveys the circle of faces. One will want to be the sharpest knife in the drawer. Because truly, the art of teaching means a lot to her. She wants to do it right. She cares. With every cell in her misbehaving body, she cares.

So. There you have it. Today's blog post. Time: 6:09 a.m. Brain already starting to feel half-baked. Thoughts that should be sparkling on the top of the sunlit pond are sinking to the bottom fast.  

But heart has not yet thrown in the towel. It says, "Have faith. You made a commitment. The universe might help you out in some way that you least expect." 

 

Notice is Hereby Given: A Rant is Coming

I know that my iPhone is easier to use than my previous cell phone was, and I appreciate that. But I don't use it fully, or even close to fully. Most of its fancy functions go untouched.  And I don't use it when I'm driving. Ever. Nor do I use it when I am walking. Ever. Nor do I text on it. I hate texting. It's an abomination. I don't want to learn the shortcuts, the abbreviations, the pidgin English.

I refuse to answer my ringing cell phone when I am in the middle of a conversation with a friend. I turn it off, while cursing and apologizing for not having remembered to turn it off before we began our visit. 

At my all-day workshop last Saturday, we took a 10-minute break at one point, so that people could go to the bathroom, refresh their coffee or tea or snack, and have the chance to socialize a bit (which is supposed to be a signficant part of any WS class - the chance to meet and connect with other writer folks). When I looked over to the kitchen area, a couple of people were standing there texting or checking their messages or emails, oblivious to anything or anyone else around them. When I looked at people who hadn't risen from their chairs, too many pairs of eyes were staring at cell phones—gone gone gone. Away away away.

At the same time that I stand firm in my resistance, I know that the march of technology is unstoppable. And I have certainly benefitted from it in many many ways. But our culture has now embraced it to the point of being consumed by it. That "consumed" part is the part that horrifies me. I could accept the pervasiveness of these "devices" if they were not so OVERWHELMINGLY ubiquitous. If only people, especially the young ones who have never known anything else, could incorporte the technology without being eaten alive by it.

What is the word for a person whose cell phone has become another indispensable body appendage?

What is the word for "ubiquitous" in "texting speak."  I don't know, and I don't want to know.

Call me curmudgeonly. Call me antiquated. Call me an old fogey. Call me a rebel, a luddite, a crazy person who still enjoys silence, someone who believes it's possible to live a good life offline, for at least some part of every day. Just a PART. I am willing to compromise.

But I am not willing to be gobbled up whole.

High Drama

You may be pleased or stunned to know that I am writing this not from my couch or bed but from a chair at the Writing Salon classroom. Yes, Jane left her house. Shocking. She had to move her adorable little Smart Car because the street cleaner was coming, so she decided to zip over to the loft (she likes to refer to it as "the loft" more than "the classroom" because "the loft" sounds so urban cool) in order to "check on things."

Mostly she just felt restless and also sick of trying to work while simultaneously trying to ignore the dirty dishes/filthy kitchen, her messy desk heaped with undone to-do stuff, her stacks of handouts on the dining room table still sitting there even though the workshop she made them for (these being extras) happened three days ago.

So Jane escaped to the loft, where she straightened topsy turvy pillows on chairs, put an abandoned thermos on the lost and found shelf, washed honey off a plate that someone forgot to wash, pushed one extra chair back into a spot behind the banister, filled up the almost empty hand soap dispenser in the bathroom, noted that the bathroom shower liner was growing tons of disgusting mold and wondered why the commuter tenant wouldn't simply toss it into the washing machine that is in the closet two feet from his bed upstairs, checked to make sure that last night's teacher actually remembered to turn on the dishwasher after loading it (he did, good boy), refilled the Brita water pitcher that was sitting waterless in the fridge, wiped ginger cookies crumbs off the kitchen table, cleaned the new whiteboard, and threw out the spoiled half and half.

Then she sat down in her favorite chair, an orange swivel chair that she wishes she had a place for at home, and began to labor over  assorted, stunningly boring administrative tasks.  Three hours passed, and her laptop battery's charge went down from 100 to 19 percent.

She is now debating whether to plug in the adaptor cord that's in her purse, and move on to creating and sending out the "Reminder" of the her next Round Robin class that starts this coming Sunday. She sends this reminder out, via Constant Contact, a few days prior to every new session, in hopes of roping in a few more procrastinators. Right now she had 29 signups. Not bad, but last year she was getting more like 40 to 45.

I know you are mesmerized by the romance of Jane's high drama existence. But I must leave you now. I must toil on, probably until hunger for something that contains wheat (which I am not allowing myself to eat right now) sends me racing back to the kitchen (that looks like it belongs to twenty-seven frat boys).

Over and out from The Loft. 

Here is a photo of my orange swivel chair, occupied by a former student of mine. A lovely person! 

Heck!

Here are some words of wisdom that I offer up to my "I Want to Write BUT..." students every time I teach the class (which I just did on Saturday):

Don't be afraid to discover what you have to say in the act of saying it.

I suppose it would behoove me to listen to my own words of wisdom. I say this today because a few minutes ago I was reluctant to attempt another blog post, because I have not yet figured out what I really want to say, because if I intend to move away from the My Great Breast Cancer Adventure theme, I need to know what the new theme will be, don't I?  Oh, and wouldn't that also entail changing the name of the blog? 

Round and round and round we go.

The truth: I actually did have a thought, first thing when I woke up this morning, that I could have posted right away, but I rejected it because: 1) It was related to having cancer, and 2) It wasn't positive, and I'm pretty sure that one reason I stopped posting for so long was because I got tired of expressing so many negative (complaining, whining, poor-me'ing) thoughts. Not only tired of it but humiliated by it.

It's embarrassing to reveal yourself in such a negative way, to let it all hang out, to not be -- or at least try your best to be -- a beacon of light for others who are in the same boat . . . a source of encouragement and inspiration, a model that others would want to emulate, an example of courage and strength and optimism in the face of adversity.

It's not fun to out yourself as a whiner, a quitter, a failure. Not fun to write a blog that ends up being a big fat downer:  Remember when I tried going on that restricted ketogenic diet last October? Remember how I shouted from the rooftops about it --about how great it was going to be, about how I was going to wield it like a Samuri's sword and kill my cancer with it, without ever going down that ugly chemo road?  

Well, I didn't stick to it. Blew it. Gave up on it. Went back to my Rice Krispies with a vengeance. Sat down one day and ate not just one slice of Orowheat Honey Wheatberry bread, but the equivalent of every wheatfield in the state of Kansas.

Which brings me back around to what that first thought was that I had this morning, the one I rejected as my next blog post because it sucks on so many levels I can hardly bear it:

As the chemo causes my tumor marker numbers to go down, it also causes me to feel worse and worse. One would expect just the opposite, right? Isn't that what good medicine does? Isn't that what healing does? Makes you feel better?

Well, not chemo. The better it works, the more miserable it makes you feel. It's poison, remember? It's toxic. It kills the good cells along with the bad. And it's cumulative. With every new infusion (one a month), I feel worse. Sicker. More disabled.

I also feel bad/sad because I know that my friends/blog fans want to hear good news from me, not this. They want to be able to leave smiley faces and "you go girl!" comments on my blog. They want to be able to relax and feel happy for me and not have to worry about me as much. I get that. I want that for them too. And for me.

I've heard that when cancer gets REALLY bad, I mean SUPER bad, then you do feel such awful pain that you will indeed beg for chemo, because at that point the chemo side effects are actually better than the pain of cancer.

I have never experienced that side of cancer or of chemo. For me, the cancer itself has never caused any pain. But for the last eight years, I've experienced a great deal of pain caused ONLY by the conventional medications I've taken, such as Arimidex, Tamoxifen and the dreaded chemo (which I haven't even had the worst versions of). And to be fair, I've also experienced pain (though lesser) from certain "alternative" medications, as well.

So far, I have not had the experience of chemo giving me relief from pain. All it does is cause pain. Suffering. It sucks.

Now. Let's see. What shall I blog about instead of cancer? I have no idea. I am so GOOD at complaining, goddamnit. Especially about cancer.

Okay, let me try this as a way to wiggle out of a "bummer" ending to this post. Here are three "before" photos and one "after" (current) photo of my dear Olivia "Boo Boo" Bouchet. She gives me such joy!

 

Normal

It occurs to me that my zeal for this blog may have dissipated because what I had come to call my New Normal finally came to be just my plain old Normal. This is not unlike coming to the realization that my cornucopia of wrinkles, jowls, bulges, bags, sags, flaps, extra chins and improperly distributed body hairs are not a brand new bizarre surreality to be shocked by and exclaimed over every day. Nope. I really am old. I really do look like this. On a regular, ongoing basis.

So I may as well get over it, get on with it, and stop shouting from the rooftops about it.

And if so, I need a new obsession to blog about. Something other than some Facebooky malarchy such as hey lookie lookie, this is my life, I just brushed my teeth again (but didn't floss) a few minutes ago.

 

 

 

 

Yesterday's Email from My Oncologist

Jane,

Your marker went from 1697 to 1232.

Hurray!!!!!! G.

 

Me: Yes, that is good news. Back in the Winter of 2010, that marker number was just beginning to rise above "less than 30." Less than 30 means you are in remission, usually (not always but usually). The rise was the start of what has been, so far, a three-year roller coaster ride, with the marker number going up and down, up and down, to well above 2,000, to as low as around 250. But never back into remission.

So: down by almost 500 in the last month is good.